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Accepting fibromyalgia after 4 years of suffering

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Posted 10/20/2013 5:26 PM (GMT 0)
Knew I had fibro for a few years but kept my symptoms to myself instead of telling my Dr everything I was going through. Why? I was afraid she would just think I was crazy. If you see me in person I'm fit ( well not as much now as 4 yrs ago) I look happy, healthy, and young. Inside I feel 129 years old. I sleep for 12 hours and wake up to feel like I've been beaten. My jaw is tight and hurts from grinding teeth all night on my mouth brace thingy. (can't name what it is today maybe tomorrow Ill remember). Have headaches 5 days out of 7 and the other 2 days are migraines. Ok I'm exhausted have so much to say and need support desperately. I feel alone and afraid. I'm afraid I can't keep working. I go to work and by hour 3 I'm suffering terribly. I'm in healthcare so my shifts are 12 hours. I keep pushing all day when I get in my car to go home I cry. Then I'm up half the night tossing and turning because pain wakes me up all night. First my neck, then my head, then my sciatic nerve, then my ankles hurt. It's a nightmare. What to do? Went from all nature to cymbalta, lortab, muscle relaxer, Xanax,fioricet, maxalt, imitrex.....still in pain. Going to a neurologist going to see about adding lyrica. I tried for three years with no meds it didn't work. Many expensive all nature organic foods,vitamins. Hours of stretching, massage, walking, meditation. Things help but nothing will ever take it away. Trying to accept it this is my life. It's not leaving I will have this forever. Going through a flare now and I'm crying. Worried about my job I love it but I can't live this way.
Posted 10/20/2013 7:05 PM (GMT 0)
(((((((((((((Gentle hugs))))))))))))))
It's hard to fight pain & stress at the same time. You need to find a way to let go of the stress because the pain will always be there.
If you can survive on less income then find a way to cut the hours back. Get your family to help out with the chores more. Talk with your doctor about the pain and see if it could be more than fibro. You may have something else that is causing extra pain. Even depression can cause pain.

We are here to support you and help you get through this adjustment time. Hang in there there is hope.
Posted 10/20/2013 7:49 PM (GMT 0)
I am sorry you are in so much pain. I just got dx. Others tell me you cannot focus on the future. Just because you are sick today does not mean the rest of your life will be sickness. Yes you have an illness and there will be tough days but focus on each day. Do not worry about tomorrow. The worry can make you sick.

This is very hard for me but thinking this way has actually helped. I was missing work way too much. I was only dx like 3 weeks ago. I have been to work more since I was dx then the whole month before I was dx. Because I realized. I am not going to let this control me. I am going to fight to be normal for as long as I can fight. No one know what will happen in their future. Good luck
Posted 10/20/2013 7:53 PM (GMT 0)
Hi FibroAnnie,

Welcome to the forum... I am so glad you have joined us.

First of all, I would like to mention an awesome thread called "fibro 101". It is the first thread on the forum and is very informative.

Flares really stink. I find my bed buddy helps me, and meditation, warm showers. I Hope that you feel better soon.

I have tried so many different things. some have worked some haven't. I went the pharma route. It is the only thing that really helps, along with walking, sleeping right and the normal...

We have many people who have different things that work for them. I am sure that they will post. Do read other posts, you can learn a lot. We are all in this together and frankly, I am glad I have all of you to talk to.

Keep hanging in there. Take care and keep posting.

Hugs, Karen...
Posted 10/20/2013 8:55 PM (GMT 0)
just wanted to welcome you and say that you are not alone, although we feel like we are at times. Have you had an official dx? which as I have found is hard to come by.

I have no bright ideas to help you, I haven't worked in over a year due to all this, so I am in awe of you and the 12 hr shifts.

right now I am trying natural supplements since Zoloft hasn't done anything and I only survive because Jesus hasn't chosen along with daily dose of clonazepam
Posted 10/20/2013 9:03 PM (GMT 0)
Hi, fibroannie, and welcome!  You might want to check out your medication at a site called Drugs.com.  Drugs can cause some of the symptoms you are having.  That would be my first step.  I know I wouldn't be taking all those medications if they weren't helping me at all.

 

My second step would be to find a good board certified Rheumatologist.  If they also are a diplomate, that's a plus.  You might have fibro and other things going on but are only being treated for fibro.  You can use healthgrades.com and vitals.com and see reviews of doctors you are looking at.  That's what I did when I needed a rheumatologist...that and talking to friends and finding people that went to this doctor.  My homework paid off...I love him! 

 

I use Robaxin as my muscle relaxer and only need half of what is prescribed to me.  It has been a Godsend for me.  I know you are on a muscle relaxer but perhaps a different one would work better. 

 

I also use ibuprofen with food, magnesium malate, vitamin D3, and Tylenol to help me be in control of my pain.  Narcotics didn't help me but these simple things did!  It's all trial and error with fibro.  What works for one doesn't necessarily work for another so keep trying thing.  I turned down Lyrica, Cymbalta, and Savella when they were offered to me.  I also turned down xanax when my husband died suddenly.  I like to be in total control of myself.

Sleeping 12 hours can be part of your problem.  If you sit or lay too long, you will be stiff as a board and have more pain.  I never sleep longer than 8 hours a night.  Studies have shown that anything more actually is bad for you!  Who would have thought sleep could be bad but it can be.  I have myself on a sleep schedule and that has helped me a lot...that and the Robaxin.  I was getting up 3-5 times a night because of pain.  Now I get up once a night to use the bathroom and fall right back to sleep. 

Gentle massage may help you too.  I get those and I learned all about trigger points from her.  I ended up buying a book off Amazon called The Trigger Point Therapy Workbook and have used that to take care of some of my pain.  I "healed" my frozen shoulder by using that book and seeing where I needed to massage to get relief.  Amazon lets you read a little of the book so you might want to check that out.  The book has diagrams of the body and where to find the trigger points for the location of your pain.

I know right now you are pretty miserable but once you find what helps you be in control of your pain, you will go on to have a full and enjoyable life in spite of this illness.  Just don't give up.  Read posts.  Our members all share what helps them so  you will get a lot of ideas that way, too.

I see that Karen directed you to Fibro  101...the first thread on the forum.  You will learn a lot about this illness there.

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

Sherrine 

Posted 10/20/2013 10:16 PM (GMT 0)
Thank you for all the replies. Sherrine thank you for taking the time to write such a detailed response. I actually do most of the things you mentioned including the supplements, exercise, and even purchased the same Trigger point book. I'm just going through a flare up and I'm really kinda pissed off about it. I had such a good week about two weeks ago it was so nice. I still had the pain and stiffness but I was able to get up take my walk, go to work and hardly use any meds except the cymbalta I take nightly. Of course my ice packs and heating pad nightly as well. I thought ok I found what works. Then here it comes flare from hell starting with migraine ...
I rarely sleep longer than 8 but during flare it can feel like you haven't slept at all. I was exaggerating the 12 hours. You are right about that being too much sleep and would make it worse. Even at work I can't sit more than 30 minutes to an hour or I know I'll get stiff. I try to walk on all my breaks on my good days.
The muscle relaxers do help but for some reason I can't stay asleep if I take it for bedtime. I've tried a couple different ones but not the one you mentioned.Ill speak to my Dr about that. Currently nuero has me taking a small dose of Xanax to sleep and relax my muscles. It really does seem to help and I'm not as stiff when I wake.
Pain med is for my neck/radiculopathy. I take 1/4 the dose prescribed the least amount possible that will work. Ibuprofen
and Tylenol do not work for it and I ended up taking them so much it was better to take the narcotic. Waiting on an epidural injection that will help for a time. Took insurance two months to approve this time which is why I have pain med to get me through until the procedure.
Of course the migraine meds are taken only when needed and prevent me from having to go to the emergency room.
Anyway don't want you to think I'm just poppin pills like crazy as we all know medicine can only do so much for this illness. I tried to do it without any meds and I couldn't do it anymore. Just that alone upsets me as I was totally against meds until this couple years wore me down. The cymbalta helps with the tiredness so much it's worth it to me. The cymbalta is also for the migraines and I was doing good for a couple a weeks (cymbalta new drug for me)not much of a headache until Last Monday. I guess that is also why I'm so upset I got relief for a short time there and I was celebrating the end of headaches and then.......it came back :(
I have to pick myself up from this episode and stop feeling sorry for myself. Thank you for listening.

I've read the fibro 101 it is a lot of things I've been finding on the internet by searching but in one nice easy place to access. Good job on this site. Thank you for it.
Posted 10/20/2013 11:14 PM (GMT 0)
Another welcome from me, Annie. Glad you found your way here! It's helped me so much in the few years I've been here. Being able to share and help eachother is such a wonderful thing....

I understand the not wanting to be dependent on drugs...I am too, but I still have the ideal of someday not needing them. I keep trying to whittle down the amount when I can.

Hope you'll keep posting!

Debbie
Posted 10/20/2013 11:39 PM (GMT 0)
Fibroannie, it looks then like you are doing all you can right now. Flares are pretty crummy but the good thing is they do go away. YAY! I still would check out the medications just to make sure none is causing some of the symptoms you are feeling.

Don't feel bad about taking medications. We all do. I am able to get away with more over the counter things but I'd take medications for some of the other illnesses I have. I'm on Medicare and am in the proverbial donut hole already.

Could you do me a favor and please make paragraphs and put spaces between the paragraphs? I get lost trying to read longer posts with no paragraphs and have to hunt to find my place again. My eyes aren't like they used to be.

Thank you for the compliment on Fibro 101. I put it together so we all wouldn't have to spend time hunting the Internet. I know the members seem to like it and we all refer back to it at times. Thanks, again!

Sherrine
Posted 10/21/2013 7:41 AM (GMT 0)
Welcome fibroannie! As I read your post I felt your pain as you describe your pain as if you have been beaten. That is how I describe mine too. I know it does get old, especially these flares. I am no longer working and have very little stress now in my life. I still have flares, but they are more manageable it seems. I think because I can rest when I need to.

Sometimes making some simple changes in your treatment for fibro can help the pain and fatigue. I take my hat off to you for working still. I know that is not easy. Hopefully this flare will end quickly for you. Just remember your not alone in your struggle. This is why I love this forum. I hope to see you around.
Posted 10/21/2013 12:00 PM (GMT 0)
Hi Fibroannie and welcome! I am so sorry you are having to go through such a difficult time. I am on the tail end of a flare myself. You have received excellent advice from others. You will find that this is a great community and very supportive. I hope you feel better soon.
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